The Loneliness of the Long Term Carer

I’ve been storing this subject for a while now. I’ve not written about it because, frankly, it’s embarrassing. And a bit self-absorbed and depressing. It’s strange how coincidences occur to jog you into doing what you’ve put off. So, fuck it, I’m going to write this. Today, I read this blog post on loneliness written by @flendog_ on Twitter. While our circumstances are different, I can definitely relate to her point of being incredibly lonely.

Those of you who follow me on Twitter might have seen this photo.

It’s me sitting at a table with a bottle of water. An innocuous and, let’s face it, dull photo. It was last Friday and I was in a cafe. I cherish those moments I get to do something vaguely ‘normal’. Something I see evidence of other people doing on a regular basis. Having fun. Or, at least, sharing their daily lives with others – be it with family, long-acquainted friends, or people they know only through social media. I see it a lot and I envy it greatly.

What I didn’t tell you was that, shortly after that photo was taken, I made my way home trying desperately to stop myself from crying like a baby. Some bloke walking through a shopping area in floods of tears would’ve been a rare old sight. Probably worthy of some ridicule on some social media. (I might have gone viral. Shit, missed an opportunity, there.) Thing is, that wasn’t the first time that’s happened. And the catalyst for this was an almighty wave of loneliness that hit me hard during the time I’m supposed to have for me. That wave has hit me quite a few times. And each time it leaves me feeling more stupid and hopeless than the last.

Here’s another self-absorbed bit – I don’t have much of a social circle to speak of. I talk to people on Twitter a lot of the time. I’ve said before that without them, I’d be in a bucket. I’ve had several offers of a listening ear from various people on Twitter, and I’m grateful for every single one of them. And your names are noted because I intend to take you up on that offer in the right circumstances. I just would like to actually see people. In the flesh – clothes optional. You know, like a lot of you out there do. I know my circumstances are very unusual and that when you ask me how things are, I feel obliged to be honest with you. And it’s dark. As of yesterday, I’m living with MW *and* my mother – and what 40-something doesn’t want that lifestyle? I’m providing round-the-clock care for MW and seeing my mother through 18 weeks of chemotherapy. These are not light subjects to touch upon. I don’t mind talking about them but this doesn’t mean that my entire oeuvre of conversation is geared around those subjects.

Where my feelings may differ from those of @flendog_’s is that I start to wonder whether people see me for what I do rather than who I am. Am I pigeonholed as just ‘that carer bloke’? Or am I such an arsehole that no-one really enjoys spending time with me? An irrational thought? Perhaps. A self-absorbed one? Most definitely. Right up my own arse. It’s an inescapable feeling, though. And not a pleasant one. It’d be nice to get a hug (or several, I’m not fussy) and be in the photos that people take of smiley people doing sociable stuff. Y’know, Instagrinning.

You might be reading this thinking “what about MW? Doesn’t *she* feel lonely too?”. Yes, she does. All she’s got is me faffing around her all the time, which is fine, to a degree. But we’re not supposed to spend 24 hours a day with each other. For 9 years and counting. The bright point is that she has carers coming in who she likes and enjoys spending time with. It’s not perfect but it’s the best we’ve got.

I haven’t got a clever ending for this post. No bringing it back to the beginning and tying it all off nicely with a quote or a line. Because I haven’t got an answer for it. So, if you see a bloke on his own nursing a coffee or a bottle of water, go and say hello. Maybe offer a hankie.

Still going. I don’t know about strong.

Before I carry on I want to clarify something about this blog. Apropos of nothing at all other than something that came to mind which burrowed its way in and won’t go. This is my space to vent – this is my outlet, if you will. I don’t have a wide circle of people that I can talk to at the drop of a hat about what I’m thinking/feeling, etc., so this is my way of letting some of it out. If you’re looking for witty, inspirational writing on how caring is a challenge to conquer, to face with a smile and overcome head-on, and how life is a big bag of love and roses then you’ve come to the wrong blog. I try not to be overly pessimistic but I am realistic. I’m aware that what appears in this blog is pretty dark, even miserable at times. I’m not sorry for that. What’s happening is a struggle and I will reflect that.

I’m feeling a bit stressed at the minute. Which is to say more so than usual. I had another panic attack the other week. Cue thinking I’m having a heart attack; cue frantic call to paramedic then ECG and blood pressure tests; cue calling neighbour to come round to sit with MW if should need to go to hospital; cue feeling utterly ridiculous, hopeless and pathetic, especially when the physical diagnostic tests came back all clear. I have high self standards. Those standards tell me that I ought to be able to cope with everything thrown at both of us because, outwardly, I’m the healthier of the two of us. Even using the word “stressed” makes me feel feeble. My mind and body tells me that isn’t true. When I say I’m a “bit stressed” I must admit that I’m more than a “bit” stressed. I’m stressed to the point of my body giving me messages to rein it in a bit and calm the fuck down. But it’s easier said (or thought) than done. When I list it all, I guess I’ve got a fair bit to worry about.

I’m stressed about MW’s constant deterioration. She can’t move her legs voluntarily at all now. The only movement comes with spasm – so her legs have to be manipulated to ensure proper blood flow. Her arms are losing strength but gaining ever more tremor – sorry, fasciculation (must be accurate). Independent feeding and drinking are becoming more difficult. She’s allergic to the morphine patches she’s just started – not to the morphine but to the adhesive patch. They make her skin blister. The MS nurse tells me that it’s important to maintain skin integrity because sores and patches of skin inflammation will make her MS symptoms worse. And then there’s the blood clot. The injections are nearly at an end but we’re in contact with so many medical people that I’ve asked if they do a health equivalent of frequent flyer miles. Or at the very least Nectar points.

MW’s father is ill as well. Her parents live at the other end of the country from us so we can’t see how he is at first hand. MW hasn’t seen her Dad for almost two years. Not that they don’t get on – they do. It’s just that the distance between them and their respective health difficulties has made it pretty much impossible for them to see each other. Her Dad has a form of leukaemia and he’s been suffering with some symptoms recently which has laid him pretty low. These may or may not be connected to the leukaemia but her Mum is worried enough to not feel confident enough to come up and see us. It’s been almost six months since she visited us. MW’s parents are both in their 70s now so their good health can’t be taken for granted. The thought is always in the back of her mind that her parents won’t be around forever. It’s a struggle trying to keep MW from worrying because it will make her MS symptoms worse.

I’m also worried whether the money we have coming in will stretch far enough. I know I’m not alone in this. But MW has developed a penchant for buying clothes that she doesn’t need just because they’re pretty. Thing is, her memory and mental acuity are worsening and she forgets what she’s bought. She goes out with a carer a couple of times a week and when she gets back she’s laden with little carrier bags. None of the items are expensive individually but it all adds up. It falls to me to ensure that what we have coming in will cover everything going out plus be able to eat. We don’t have a hedonistic lifestyle, neither of us drink or smoke, but we want to be able to live rather than exist. Frankly, it’s a struggle. I’ve asked her repeatedly not to do it. I’ve got angry. I’ve pleaded. I’ve spoken to her rationally because she’s not a child. Yet she forgets. I’m having to slowly realise that she’s losing these abilities, and that she is, in a way, becoming more child-like. I don’t want to treat her like she’s six and give her “pocket money”. Maybe I’m just waking up to the fact that this is another irreversible change in her personality caused by those damn sheep in her brain (on an MRI scan MS lesions are little white blobs which MW called “sheep”). Whatever the “cause”, it’s another tiny chink in the relationship.

In short, I feel like I’m being closed in from all sides and struggling to keep my head above water. I spend a lot of time inside my own head – if that makes any kind of sense – trying to make sense of everything and remain sane throughout. I try to second guess MW’s MS so its effects are managed as best as possible. I try to ensure that we both are as comfortable as we can be given the circumstances we’re in. I feel myself getting angry and frustrated on a more frequent basis. Somebody used the word “inspirational” to me the other day but I genuinely, genuinely cannot fathom why. I know it was meant as a compliment, and I am flattered. But when I look at what’s happening to me and how I’m dealing with everything, that is the last word I would use about me. I’m just trying to do the best I can and it ain’t easy.

As I wrote in the first paragraph, I know this blog can be a bit grim. I’m not going to apologise for that. I don’t spill all this out on Twitter because people would soon get sick of it. I’d rather get it all out on here – this is my blog, for my own benefit because, without it, I’d be in a much worse place.

Promises, promises….

In my last syrupy offering, I wrote about the importance of a social network – including but not limited to online networks. I also said I’d expand on the feelings of isolations that can be felt by carers. Here goes…

Today, for the first time, I spoke on the phone with a friend that I’ve only communicated with online. This friend has MS. This friend is also a carer. This friend has just suffered the bereavement of somebody vitally important to them. The loving relationship between my friend and the person they lost was the most important connection between them. But the death also meant my friend lost a big piece of the small network of support they have which helps them cope with their many daily struggles. My friend is so good at managing their own condition plus managing another condition as a carer. However, today’s conversation gave me the over-riding feeling that my friend feels incredibly isolated while trying to contend with everything on a daily basis. Their bereavement has knocked them out of kilter and they’re struggling to re-gain the strength they’ve shown in dealing with the hardships that life has brought them for some years. I hope I was able to give some kind of comfort. I’ll return to my friend later.

After listening to my friend, I couldn’t help but remember my own experiences of isolation. Our conversation revealed many parallels in our lives. Prior to my wife being diagnosed with MS, we both worked for the same department in the Civil Service. We had a circle of friends (albeit they’d known my wife longer than me) with whom we’d socialise on a regular basis. When we gave them the news of a diagnosis of MS, they were initially supportive. A lot of them told us the same thing, “If you need anything, just ask us – even if it’s just a chat”. Disabled people and carers all over the world will have heard this statement or something similar. And I’m sure you know which of your friends you can rely on for that kind of help. What I wasn’t prepared for were the people who I thought were good friends who sank without trace. One particular couple from this circle worked in the same building as we did. They’d park their car near our home, which was only 10 minutes’ walk from the office. We’d have a drink, have a laugh, etc. – the usual things you do with friends. After we told them of my wife’s diagnosis, this couple would still park their car near our home. Yet they’d pass our home twice a day and never knock. They came in to see my wife only once. And that was because they’d passed the house while I was standing on the step waiting for a supermarket shopping delivery. I think they felt shamed into asking to see her. We saw more instances of this kind of boycott during the first year after my wife’s diagnosis. I can’t tell you how angry I’d get. I wasn’t bothered about them coming to see me but my wife was suffering greatly after her diagnosis. How could they do this to her? What sort of friends were they anyway? To abandon her at the first sign of adversity? As the years have passed, I’ve learned to recognised who can and can’t be relied on.

But this behaviour isn’t limited only to “friends”. I was telling the story of the boycotting friends to my family during a get-together. Amid much head-shaking and tutting, I was encouraged to move back to where I’d grown up. I remember vividly the words said to me by one in particular, “Don’t worry, we’ll support you." Support. We were desperate for support. During the three years we lived near them, we saw my family……… twice. Twice. Three times if you include bumping into them in a town centre. You can choose your friends, but you expect more from family surely? I was tired of being let down. I felt very responsible because it was my family who’d promised much and delivered little. This did nothing to improve my increasingly cynical view of people in general. My wife and I were both pretty miserable living there despite the fact that the house we lived in was ideal and that we had breathtaking views from the windows. We decided that we’d move somewhere that would suit us as we’re both "city” people.

Which brings me to the importance of social interaction. I won’t repeat everything from my last post – you can read here the effect that Twitter and the internet in general have had on my life. I want to say this to my friend (who I’m sure will recognise themselves from the first paragraph) : you have so much to confront every day and you cope with it with smiles and love. You face down indescribable challenges with smiles and love. YOU are one of those inspirational people that you spoke about. But you must look after yourself too. Every once in a while, you must be selfish because, if you’re not, you’ll damage yourself. I’m going to tell you something that you’ve heard before – if you need anything, even a chat, just ask. And, because I know what you face, I mean it.

I ran this post past my friend prior to releasing it and she’s happy for me to tell you about her website for her son’s condition – Ring 14.

EDIT: 15.55 25/06 – I feel it’s important to point out that the one family member that was outstanding was my Mother. But, as she’s in her 70s, there is a limit to what she can do. Besides, not being near her now means she can live her life as she sees fit.

Schmaltzy but heart-felt.

I seem to spend an inordinate amount of time on Twitter. You could say that I’m addicted to it. There. I’ve said it. But I don’t feel a sense of catharsis or guilt. I want to revel in my Twittericity – to wallow in it indulgently. Twitter allows me to talk to people, and I like talking to people. It doesn’t have to be a long conversation with one person. It can be the odd quip here and there. Twitter is perfect for me because I can have lots of little chats with lots of people at the same time. I can dip in and out of conversations as and when I like. So, although I use Twitter a lot, I LIKE Twitter a lot. But I really, REALLY like everybody who talks to me on Twitter – yes, including you!

This post isn’t designed to be an advert for Twitter, it can do its own promotion far more effectively than me. It’s an appreciation and thank you to everyone who’s spoken to me there and elsewhere on the internet. Because, like 50% of all carers in the UK, I can feel isolated. Isolation has pretty much been a running theme since my wife was diagnosed – since May ‘05 we’ve pretty much spent every hour of every day together. And that’s not a healthy state of affairs. Friends and family alike have also fallen by the wayside. But these are points that I’ll expand on in other posts. I don’t want to focus entirely on the negative aspects of my life here. I want to write something positive ( if only avoid ruining every reader’s day ). Whilst the number of positives caring has afforded me is small, each one is precious. One such positive is the opportunity that the internet gives me to talk to people around the world: other people in similar circumstances as me, people affected by MS, or – in the case of Twitter – just a bunch of people with interests similar to mine.

Through Twitter, I’ve been able to talk to lots of lovely new people and I’ve even met one of them ( take a bow @lindylou120 ). I’d like to meet more followers and followed. I’ll have to find a way to make that happen. Even if I don’t get to meet them, I enjoy the way that the Internet gives me an unlimited scope for contacting people. You might say “Well, that’s pretty obvious as that’s what the internet was designed for”. I agree. But we take it for granted now, and I want to pause to reflect on its profound effect on my life. As I say, it’s precious to me.

I’ve also had the good fortune to talk to a group of Italian people who are all affected by MS. I was looking around for an international viewpoint of how MS is treated and found the website for the Italian association devoted to MS and those affected by it. Despite not speaking a word of Italian, I signed up to their forum and started talking to a few people there. And when some of them opened their own live chat room, I went with them. They’ve helped me teach myself Italian over the past two years and they’re firm friends now. We’ve been to Italy twice now and met one particular couple each time. Later this year, they’re coming to stay with us. Great, huh?

Well, now. Having read and re-read this post, I realise it’s starting to sound schmaltzy. I hate being schmaltzy ( however, I do like the word “schmaltz” but I digress ) so I’ll knock it on the head. I guess I’m saying thank you to anyone and everyone who chats to me. And I hope you don’t mind my enthusiastic tweet-feed ( I get this confused with timeline ) but it helps me feel a little more “normal” ( a hateful phrase but one that fits most precisely ).

End of schmaltz.

Thank you and hello.

Erm…..it seems that my initial post has touched a nerve. When I drafted it, I didn’t know that it would be taken notice of at all – there are lots of blogs on the internet and social media sites are full of people highlighting weighty causes of their own. I thought mine would be lost in the ether. I have lots of people to thank from Twitter for passing my message on including (but not limited to) @HLNdevon , @TwistedJamie , @ThePaulDaniels and @charltonbrooker to name a few. If you’ve read this, re-blogged it, re-tweeted it, commented on it, or anything-ed it, thank you very much indeed. It means a lot that you’ve taken notice. People have said some very kind things to me or about me. I am truly touched ( and a bit embarrassed – I blush easily! ) . I wanted to write this post to clarify/expand on a few things.

1. My wife and I have had some intense ( i.e. tearful ) discussions about the subject of assisted suicide since I showed her what I’d written. She assures me that she has no thoughts of ending her own life and nor will she. She says she has people around her that she doesn’t want to leave and things in life that she looks forward to. I’m happy to accept this because it suits me to hear it. Despite this, I can’t help but have the issue nagging away in a small corner of the back of my mind because neither of us knows what the future holds, good or bad. Which brings me to…

2. I’ve spoken to a couple of people who have re-tweeted or re-blogged my post. They have MS in their families and the subject of my first post is largely theoretical for them but they have some concerns for the future. My golden rule for dealing with my wife’s MS has always been to trust her neurologist. This is the person who will have the best idea of how an MS sufferer’s condition will progress ( apologies to specialist MS nurses ). I can understand that people will want to know with some certainty how their particular MS will develop. I do feel a little sorry for neurologists where MS is concerned because it’s notoriously difficult to diagnose with 100% accuracy and each individual’s MS will be different. As much as they might want to give the information that a sufferer looks for, they can only be reactive to MS and its symptoms, not proactive. You can’t look at one person’s MS and think that another’s will be the same. We deal with my wife’s symptoms as they arise and get on with life as best we can.

3. Some other people have expressed an interest in reading more about how life is for us. I once considered doing a daily or weekly blog as a form of catharsis but I’m not diligent enough to do it. Plus I suspect it would get very dull, very quickly. I will post when something pops into my head.

4. Lastly, I want to give you a little more information about me. My name is Simon. Although I care for my wife and love her dearly, I am by no means a saint – my history is as chequered as that of any footballer. I self-analyse far too much and can be as neurotic and as shallow as the next person. I guess I’m just scared of being judged now that I’ve put my head above the parapet. Welcome to my little part of the world.